Limbo

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Can I accomplish anything, anything at all, sitting in a hot car shoving a sandwich into my piehole as quickly as I can, while savoring a few moment’s peace before returning to my sweatshop-esque job? Anything? Some inspirational words strung together in a mildly pleasing manner, or even an idea to escape this job purgatory – this endless treadmill going faster and faster and faster, until my body gives out and I collapse and die, then get flung against the wall like in those YouTube fail videos?

No? Okay, then.

Well, at least I fucking tried. Because that’s what I told myself I would do: take one small step every single day to change my unsavory life and work situations, in order to ease my stress and hopefully find some happiness. If it doesn’t work, it doesn’t work. But I have a sneaky feeling a magical change will not just happen upon me unless I do something, however small, to initiate it. I can’t just sit here dreaming, pretending I’m someone else, somewhere else, being all happy and fulfilled and shit. I need to take concrete steps – even baby steps, if necessary – so that maybe, just maybe, I can someday feel happy and fulfilled in my real, actual, non-imaginary life.

Like, maybe every day I should work on my resume and portfolio, just a little. (I have a degree in Graphic Design.) One day it will be complete, and then I can show it to people. Maybe, just maybe, one of them will see it and say, “It’s okay that you let your technical skills deteriorate while you worked at that sweatshop for over a decade; you have potential, so we’ll get you up to speed.” And then they’ll pay me a good salary.

Or maybe I could work every day, just a little bit, on my various writing projects. One day, eventually, I will finish some and show them to people. Then maybe someone will say, “It’s okay that you forgot most of the vocabulary words and grammar you learned in high school, and that you were too afraid to even apply to the writing college you wanted to go to back when you could actually write, so you got involved in an abusive relationship for 9 years and let your dreams wither and die.” (I’ll interrupt them right then to point out their run-on sentence. That could salvage some lost grammar points.) Then they’ll tell me I have potential, and ask to publish something I wrote. Like, for money and stuff. I’d really like to have money. In fact, my biggest desire right now is to have the lower part of my Maslow’s hierarchy of needs met. I know, it’s a tall order.

Maybe I could also write a list of everything I want in life as though I’ve already gotten it, and meditate on it every day. Several years ago I heard of a lottery winner who meditated on a certain number every night, and even slept with the number on a piece of paper under her pillow. She ended up winning that exact lottery amount. It was a lot, too. Like, over 20 million. Why couldn’t that be me? I’d have to start playing the lottery for it to work, but maybe it’s do-able.

Uh-oh. Lottery fantasies. I’m turning into my mother again. Let’s switch to a more realistic list of desires, because who’s kidding who? There’s no way I’m going to drag myself inside some gas station every week to stand in line for lottery tickets. (If not for this aversion, I could totally win, though.)

So, here’s my list of goals…

Wait…I just read an article saying that people are less likely to achieve their goals when they share them. And it was backed by actual science, I think. So maybe I shouldn’t broadcast my goals to anyone. Hmmm…

Here’s what I’ll do instead. I’ll copy down the list I made when I was acutely ill with MCS. As part of the Gupta Programme, which is responsible for my 80% recovery from MCS (roughly), I was instructed to make a list of what I’d like to see my future, healthy self doing in my future, healthy life. I made the list, though it was hard. I cried while writing, missing my healthy self, and hesitant to fantasize – however briefly – about a future I ached for more that anything, but which might not come to fruition. But as skeptical as I can be, I am also very open-minded, and willing to give almost anything a chance. So, I made the list and dove into the programme. (That’s the British spelling, BTW, otherwise I would have used my grammar skills to correct it. Or spelling skills. Is spelling an aspect of grammar? I really have forgotten everything, haven’t I?)

Guess what? The programme worked. Yes, I have thoroughly slacked on the exercises the last couple years, and really should get back to it, but at the time it was my savior. It pulled me out from the depths of hell so I could breathe again. Literally. The MCS gave me breathing trouble at times. Either that, or it made the act of breathing stressful when I inhaled chemicals which made me ill. Can you imagine what it feels like to experience stress just from the simple and vital act of breathing? I didn’t think so. But don’t feel bad like you lack empathy, or anything – most people can’t imagine such a thing. (Well, I guess people with asthma and other lung conditions can. Uh…nevermind.)

ANYWAY, many months after experiencing recovery, I ran across my old list. Guess what? Every single thing I wrote down happened – all the things that made me cry to wish for, because I thought I’d never experience them again. I was astounded. (Well, not EVERYTHING happened. I couldn’t move and paint walls or garden, for instance. But I’m certain I could have done those things and remained healthy had there been an opportunity.) I’m not saying the act of making the list was magical, but I am saying that I got to experience many things I had formerly believed were utterly impossible. That was the miracle.

So, at the end of this post, I think I’ll copy that old list instead of my current list, which I plan on making later. That way I don’t jinx my goals. When everything on the current list comes true, or at least a significant number, I’ll post that one, too. Until then, it’s for my eyes only.

Hey, look…I actually did string some words together on my lunch break! That’s a minor accomplishment. I’m terribly late returning to work, though, so it ended up costing me $15 in wages, or approximately $2 after taxes. LOL. But that’s okay, because I took a baby step. Maybe tomorrow I’ll try to take a baby step that doesn’t cost me the money I’m trying to materialize in my life.

Also, I feel better. A little inspired, even. And I no longer have the urge to take a nap on the train tracks. Maslow’s hierarchy of needs, here I come!* (I wonder if that sentence has ever been uttered in the history of language.)

*Okay, the article I linked to earlier informed me that I do not need to have my lower-rung needs met in order to be self-actualized, but god dammit, I still intend to eventually get my basic needs met before I drop dead, hopefully to avoid dropping dead prematurely due to the stress of not having my basic needs met. And fuck grammar – I’m gonna leave that possibly run-on sentence with repetitive words alone. I aced this stupid grammar test the other day. Doesn’t that count for anything?

Future Self list, from approximately 2011:

1. I am wearing makeup(I could barely use any personal care products back then, let alone frivolous makeup.)2. I have a nice haircut(I couldn’t visit salons because of their ambient chemicals. My hair was a long, frizzy, stringy mop with roots growing out for 2 years.)3. I am sitting in a coffee shop writing, reading, and drinking coffee(None of that was possible when I was sick(er).)4. I am painting the walls of my own new house(I couldn’t tolerate freshly painted anything. In fact, fresh paint in my workplace contributed to my development of MCS.)5. I am gardening(I think I just wanted to get my hands in some dirt. I probably could have had an organic garden, if I had had my own yard and the stamina to actually grow it. Okay, maybe I couldn’t have gardened while sick with MCS.)6. I am visiting friends(People’s personal care and laundry products made me ill, so I stopped visiting friends.)7. I am on an airplane(That thought was a joke when I couldn’t grocery shop without getting sick.)8. I am on vacation in a city(Again, a joke. Plus, pollution.)9. I am on vacation someplace tropical(Travel was difficult/impossible back then. Now that I’ve traveled again, I am officially counting an East Coast beach as “someplace tropical”, because fuck it – it’s a beach. Close enough.)10. I am visiting my family(I couldn’t do that for years. My one attempt was disastrous healthwise.)11. I am eating delicious food(I ate a boring-ass diet for a couple of years due to food sensitivities. None of it was delicious.)12. I am hiking outdoors(I was too sick to exercise or enjoy nature back then.)13. I am laughing(I rarely laughed.)14. I am happy(I was more miserable than I ever imagined possible on a daily basis. Not that I’m the epitome of happiness now, but at least those pesky death fantasies are mostly gone.)

See? The miracle of lists. Now I’m off to make a new one, because as miraculous as it was to achieve these goals at the time, they no longer suffice. It’s time to get out of this limbo/purgatory, for fuck’s sake, already.

A funny thing happened the other day. I can’t remember why, but I decided to browse through old notes I made while in the acute days of illness. Oh yeah, I think I wanted to see if I had written any journal-like chronicles of my suffering, in order to post here so people could understand what it was like. I didn’t see any at first glance – most of my notes consisted of supplements to try, and other avenues of healing to investigate. But among those, I found little snippets of insight into my life and illness, realizations about the bigger picture of what was happening to me.

Suddenly, and strangely, I found myself becoming nostalgic for those illness-ridden days. You see, in the midst of suffering, I was also making important self-discoveries and gaining inner strength. It brewed under the surface of my suffering, hints of it peeking out in flashes of insight, providing inexplicable solace from time to time. Not only that, but I had such hope sometimes. (During the times I could feel it through the despair, that is. I couldn’t always.) I frequently thought to myself, “If I could just get my health back…” What? Everything would magically be okay? I’m not exactly sure what I thought. But I was so hopeful for all the great things I could do once I was well. I had such zest for this possible, theoretical future life – certainly more so than I had pre-illness. Having your health stolen will do that to a person.

Anyway, my health did drastically improve eventually, for which I’m thankful every day. But you know what I found here within this health, in the aftermath of acute suffering? Drudgery. A whole lot of goddamn drudgery. That, and alienation. I no longer have close friends, or feel the camaraderie of sharing with other sufferers. I feel disconnected from my illness support groups, not sick enough to currently relate to everyone, but not well enough to relate to normal, healthy people. So, I basically feel disconnected from everyone.

On one hand, of course I am grateful for everything my recovery has brought me: the ability to do many things I previously could not do, eat things I could not eat, etc. I AM grateful to be past the horrid suffering which left me longing for death on a near-constant basis. However…I did not want to recover just to return to mediocrity and drudgery for the rest of my days, or sit here feeling alienated from the world because of my health experiences. Beyond the “OMG, I can eat a bowl of berries now without getting an excruciating migraine”, and “I can actually focus on something other than my constant ill feelings” and “I can’t believe I can inhale normal laundry detergent fumes without wanting to pass out and die,” there’s an anticlimactic and somewhat jarring “Oh shit…THIS is my life?” Now that I’ve sampled the underworld in the form of chronic illness, and re-emerged into real life, once the shock wore off I could see everything wrong with it – like all the bad decisions I made which culminated in the subpar existence I dwell in these days.

It’s not all bad. I savor the gains I’ve made like a person set free after a prison sentence. But the rest of it? I’ve come to realize that I’m not being true to myself in my life. One example is that I’m wasting away working a job I hate, eroding my spirit little by little. There are other examples too numerous to list. This is unacceptable, but I don’t know how to change it, a thought that leaves me vaguely miserable and anxiety-ridden.

To solve the job issue, I’ve read several articles and a few books about mid-life career changes, and following your calling in life, but those texts don’t feel like they were written for me. They were written for people who already had decent careers for a couple of decades. People with savings accounts, and spouses to help them in their daily lives. They weren’t written for people who squandered their potential, had a baby too young, wasted years in bad relationships, then became ill for years while whatever skills they learned in college grew rusty, and technological advances rendered them nearly obsolete. How can people like me, who work like dogs and live paycheck to paycheck, aspire to such lofty goals as career changes, especially when there is so little time, money, and energy leftover once responsibilities are fulfilled? Not to mention, even if I had the time and money to, say, return to school, what about my ailing brain? College requires intelligent thought, which can be scarce in these post-illness days. Me not smart no more. But that’s a side note I won’t bother with for now.

So anyway, within my own private nightmare of illness, I had breakthrough periods of hope, of inspiration. My goal was to grow and heal…and I did! What a miracle! But here I am after the novelty of healing wore off, staring in the face of the drudgery and mediocrity that is eroding my spirit again, wondering “What the hell am I doing?” and “What now?” Hence my nostalgia for the illness days, which contained the ability for me to hope and dream without the necessity of taking action. After all, I was too sick. Now that I’m less sick, I have shit to figure out.

Part of me feels guilty, like I’m taking life for granted. Do you know how desperately I longed to return to my normal life, drudgery and all? How many others would long to trade their suffering for my life, problems and all? So many, I’m sure. But now that I’m here, it’s not good enough? Like, who do I think I am, anyway?

I think what happened was that getting sick stripped my life bare, exposing all of its problems so clearly. I realized during these illnesses (MCS and FQ poisoning), as I was steeped in fear of my terrifying symptoms and my uncertain future, that this fear was not confined to my illnesses; It had been an underlying factor permeating my existence since as far back as I could recall. I had been scared of everything my whole life. I was scared of showing my true self to others, scared of failure, but also scared of success. (That realization was a huge shock). In short, I was scared of living. And in hindsight, I could reflect back on my life and see how most of my life choices were actually rooted in fear. How I held myself back for fear of failing, and fear of others discovering I was unworthy. Unworthy of…what? Who knows. It’s like I felt unworthy of life in general, but functioned for years and years completely unaware of this, as well as my other fear-based patterns. Getting ill forced me to recognize this, by so desperately longing to return to life, but realizing the way I had been living all along had actually been harming my spirit on a deep level. And now that I’m better, I can’t go back to my former state of existence, unconscious of my own destructive patterns. But what should I do instead?

I have no idea.

As I said, there’s no instruction manual for re-entering life after two chronic, invisible illness which are unacknowledged by most people, aware of your destructive patterns, and living paycheck to paycheck. I literally have no idea what I’m doing, or where to go from here, alienated, shell-shocked, none of my old paradigms working any longer.

So, what now? I guess I’ll just carry on until something comes clear. Maybe if I try to live more fearlessly, being true to myself in the process, opportunities and ideas will more naturally open to me. I hope so, anyway, because that’s all I can think to do. Surely I won’t spend the next several decades functioning in this state of limbo…will I? At the very least, I would love to figure out how to reconcile gratitude for recovery with discontent for the conditions of my life which are making me unhappy. It feels like a contradiction, even though I guess it isn’t. It’s simply being aware of gratitude while recognizing that I can’t return to the dysfunctional ways I used to live, and not quite knowing what to do in the meantime.

I guess in this way, recovering from illness has been like a metamorphosis. Like emerging from a cocoon, remembering the caterpillar days, but not yet knowing how to fly. I hope to someday learn…or at least remember that underneath my troubles and uncertainty, a hidden but powerful, instinctual part of me already knows.